Friday, July 30, 2010

Visiting the county fair, I was determined for Brayden to be in on the action. Yes, he is completely content sitting in his chair while the rest of us participate in all things fair related. But I want to give him experiences...some he likes, some he does not. I want to push him a little. I have this idea that you'll never know unless you try.

First stop at the fair for Brayden, the bunnies. He got to hold one, while a sweet little 4H-er helped. Jeremy helped him pet the soft hair. Brayden's eyes were huge! So we are saying that he liked it! (No, Brayden is not getting a bunny).Brayden also tried petting the sheep. At first he cried about it, then he stretched out his little arm as far as he could to reach for it!

We headed for the pigs and cows...I refrained from making him pet those or go on any carnival rides.

Last stop was the auction. Brayden did not seem to enjoy the auctioneer rattling off numbers despite sitting in daddy's lap.

Yesterday afternoon was quality time at Children's in DC for the ketogenic clinic.

There we saw the nutritionist and the neurologist that runs the keto clinic.

Brayden is keeping everyone perplexed...Problem 1 - he is not gaining weight. In fact he lost weight; down 29 lbs to 27 lbs.Answer - trying to increase he calories...yet again.

Problem 2 - his kidneys. The urinalysis is showing high levels of calcium. He does have a kidney stone in his kidney. Answer - seeing a nephrologist to really have his kidneys looked at. Also adding more fluid to his diet and a prescription for Bicitrate (not really sure what that does yet). And weaning him off one of his seizure medications, Topomax, that could cause kidney problems.

Problem 3 - despite the 4.25 to 1 ratio of the ketogenic diet, Brayden's urine testing is showing that he is not in ketosis (the whole point of the diet).Answer - a blood test. The urine test may not give accurate results since his kidneys may not be functioning properly or so the dr explained to me. He formula mixture may need to be altered.

Wednesday, July 28, 2010

A morning at Wolf Trap. We (Carter, Luke, Brayden, Brayden's nurse and I) headed into the Theater in the Woods for a children's puppet show.

I called ahead of time to make sure we could bring Brayden, park our car in an accessible area, walk back to the theater and have decent seating for the theater. The park ranger on the phone was really excited to bring a child in a wheelchair, attempting to set things up for us before the day even happened. I assured him that we were fine, I just wanted to make sure we could make it all the way back to the theater which is actually in the woods and the handicap seats were not the back (unfortunately like many other places).

The seats were about in the middle, just fine. At first Brayden seemed to be thinking hard about where he was, all of the sounds, children around, and the music. Apparently he was not to thrilled by it and feel asleep sometime during the show.

Saturday, July 24, 2010

It is crazy hot here in VA. Today up to 110 degrees. Earlier this week it was a bearable 95 degrees (sarcasm), so we headed to a local pool that has slides and a lazy river.

Brayden does not control his body temperature very well. Being outside in the heat, leads to him literally turning red and getting a fever (which could lead to some seizures). We have learned that dips in the pool helps him cool off and he really enjoys being in the water. He really likes the lazy river.

This particular day at the pool, Brayden and his nurse Christina were floating around the lazy river (she has to hold him). As they were floating around a lifeguard (who might have been no older than 2o years old) decided he needed to give some advice.

Imagine Brayden in Christina's lap in a tube floating around the lazy river, a lifeguard from his post starts shouting. Here is a gist of the conversation between the lifeguard and Brayden's nurse...

Lifeguard, "You might need to get him out, he is looking red."

Nurse, "He is fine, he's cooling off."

Lifeguard, "It might be a good idea to get him out of the sun."

Nurse, "He does not control he body temperature so he is cooling off in the pool."

Thursday, July 22, 2010

Brayden's hands are not used for much. He can put his left pointer finger in his mouth for comfort. The majority of the time he requires help getting his hands in to place. Sometimes you can see him concentrate and start moving his cute little fingers around trying to understand what he is touching. The movement is so little but still so big. Each time he does it, my heart smiles.

This week we ventured to the Natural History Museum in DC. Brayden was not overwhelmed by all the noises, people or even the 3D dinosaur movie (no 3D glasses for him). We went into a room of the museum for children called the Discovery Room, a place where the kids could look, touch, smell, etc. everything in the room. Brayden's little hands were busy. Each item placed in his hands, he toke a moment to process what it was and then slowly moved his fingers around feeling what it was.

He did he best with an abacus, really moving his fingers around the beads.

Wednesday, July 14, 2010

Brayden and I headed down to Children's for a quick round of 7:00 p.m. to 6:00 a.m. for his sleep study.

The past few hospital stays, the nurses and doctors noticed that Brayden's heart rate and breathing go extremely low a few times during his sleep. Low enough that they put him on oxygen while he was admitted. During one stay, Jeremy left the room and came back to find a team of people surrounding him preparing for action. But Brayden recovers, on his own, from these moments.

A sleep study was ordered for him to see if he needs to be on a CPAP or nasal cannula for bedtime. He has not been on one but as he gets bigger it may be harder for is body to recover from the extremely low heart rate and breathing.

We loaded up all his gear and did the sleep study. The results will be at least a few weeks.

The sleep study is considered out patient so we had to bring ALL of Brayden's gear, including diapers and wipes. I had to bring the meds, feeding pump and supplies and his suction machine (which is too heavy). It required two trips to the car to bring it all in. I looked like I was setting up for the week.

By about 9:00 p.m. Brayden was hooked up and ready to go. He slept pretty well not much different than when he is at home. Then at 5:30 a.m. the tech can in, turned on the lights, unhooked Brayden and told us we were free to go.

Monday, July 12, 2010

As I was putting up pictures from our vacation on the family blog, I started to put up this picture. But then changed my mind...nothing to great about it. We were just walking around the dock after a stressful dinner, Brayden crying and crying.

Then I looked a bit closer at the picture, Luke was holding Brayden's hand as they were walking.

Carter and Luke were so patient with Brayden on vacation. The drive to the beach they had to ride in almost absolute silence for 6+ hours because any sound, bump or movement seemed to upset Brayden.

On vacation, Carter would curl up on the couch with Brayden. Luke tried to console him as well.

The days leading up to vacation were a bit stressful. Brayden with the kidney stone and not knowing what to do about it, he has not been in ketosis which could cause more seizures (the reason for very specific and carefully calculated ketogenic diet) and he had been screaming in pain for a many days.

I choose to ignore most of it (after letting the doctors know that we were heading out of town for a vacation) until we returned. We had to go on vacation!

Brayden was not happy on vacation. He did have good moments but still not himself.

But what did make the vacation pretty easier for us...

Brayden's nurse came along.

Right across from our house was the accessible ramp to the beach. Easy to wheel Brayden and all of our beach gear instead of climbing those OBX beach dune stairs.

Friday, July 9, 2010

My middle boy, Luke, is about to lose his first tooth. He has been waiting for this moment for many months. He so desperately wants to be a big boy. When we realized yesterday that his tooth was loose, he declared that he needed to call his friends and family to tell them. I told him to wait until the tooth came out and we could send pictures. All night he wiggled the tooth. His excitement for this big moment in his world is so fun and precious. I so love watching it.

Before I settled into bed last night, I checked on Brayden. I starting thinking about Luke's excitement and how much I want that for Brayden. He shows NO excitement. We say he likes something if he is relaxed and content. He does not smile, laugh, squeal because he is excited or happy. Yes he does smile (what seems like only a couple of times a month) but not for real reason, at least apparent to us. Once a doctor told me that he could have "smiling" seizures but I ignored that and still think he is smiling for some reason.

I want Brayden to experience excitement and joy. Selfishly I want to see it, I want to know when he does.

When the time comes for Brayden to lose his first tooth, I will be praying for him not to swallow it and choke on it.

Tuesday, July 6, 2010

Brayden handled the vacation...meaning he cried most of the trip down. Cried on and off while we were there. He did have moments of peace when napping under the umbrella at the beach.

Not really sure what he is trying to tell us.

He did not try the sand or the ocean this time. He was so grouchy we did as little as possible with him for fear it might set him off. He did try the pool (which was warm like a cool bath) and handled it a few times. For the most part he sat in the double jogger...one seat for him, one for his feeding pump bag.

So Brayden was grouchy. I was grouchy too (although I tried not to be). My camera broke. My Canon Digital EOS, my most prized possession, broke about three days into the vacation. I called the service line, it sounds like the mirror and shutter are done. That camera has not left my side for almost three years. As most of you know, I take pictures of everything (and I mean everything). What to do on vacation with no camera? I used Jeremy's little work one and our Flip video but it just was not the same. Now I have to decide to have my camera fixed or just buy a new one.

Psalm 139: 13-18For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you…Your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.